Forums


General Discussion

Getting worse and having a hard time dealing

  • By MrsDisappointment

    I was diagnosed in may 2013. Every year I’m getting worse. My last VectraD test was 59 and i had to leave my job of 16 years in 2015 to go on disability. I’ve been on plaquenil and methotrexate the whole time. We tried Orencia briefly, but it made me very sick. No other biologics are recommended since I’m also a cancer survivor. I just switched to a new rheumatologist who added sulfasalazine to my meds, but no improvement yet. This past week has been the most painful in years. I can barely drive or even walk. I’m getting so depressed. This is not how a 37 year old envisions her life. My husband and kids are so good, but I know it’s wearing on them too. I know I’m a burden on them and i don’t know how much more I can take.

    Has anyone else been at this point? Any other meds or treatments that have worked?

    Reply Created with Sketch. reply
  • By Erin Rush Moderator

    Oh, MrsDisappointment, I am so sorry you are feeling this way. I know many, many of our members have had points in their lives like this; where they are just worn down and disheartened by it all. Please don’t hesitate to let your doctor know how you are feeling. What you are feeling is not unusual. I mean, you have been through a lot in just 3+ years! I think it’s normal to mourn the loss of your old life and your health. It’s part of the process of accepting a new life. Here is some basis information on the various mental health issues people living with RA may face — https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/. You may want to consider finding a local support group to offer you some extra support. The best place to start is the arthritis foundation website — http://www.arthritis.org/. While the arthritis foundation also deals with OA, some local offices and chapters also have RA-specific support groups and resources. It helps to find people that can really relate to what you are going through! Your rheumatologist may be able to suggest anti-depressants that may help. It may take awhile to find a medication that works for you, but that is an option you may consider. I know it’s sometimes hard to find the motivation to try new things like this when you are feeling physically and emotionally drained, but please know that you have already taken a step in the right direction just by opening up and sharing here. I hope you get some feedback from our members! You can also check out our Facebook page, if you haven’t already — https://www.facebook.com/RheumatoidArthritisDotNet/. Thank you for reaching out. Please know our community is open 24/7! Best, Erin, RheumatoidArthritis.net Team Member.

    Reply Created with Sketch. reply
    • By sharoncookie57

      O my gosh yes. I was so down last week that I didn’t want to go on. Had made doctors appointment that I had to get out of the house. I asked the doctor is I will be in wheelchair soon and he said yes. That bought tears and feeling of the end of things I wanted out of life. the feeling is of hopelessness. Can’t stop feeling so bad this has happened. Hopefully this will end soon and can accept it. You are not alone.

      Reply Created with Sketch. reply
    • By dgrear

      I am at the point of just throwing in the towel myself. I have been dealing with RA since 2007 after a surgery to repair my shoulder do to a work related accident. I am a 41 year old male and I truly feel like a worthless piece of garbage. My wife of 17 years left me for a younger man because I can’t do the things I used to be able to do. I have had to quit a few jobs I have really enjoyed and of course each time I find something I can do it is for less money. I have lost everything I have worked so hard for before I was diagnosed. I have already been turned down for disability and can’t wait around for an appeal. I need to have two crucial surgeries but just started another new job. I have had to deal with the VA for the last couple of years for all of my medical needs so that alone can push someone over the edge. My two young boys have been the only thing that has kept me going but it seems to get harder and harder every day that goes by. I just don’t know how much more I can take.

      Reply Created with Sketch. reply
    • By Tamara Haag Moderator

      Hi dgear, I’m so sorry you are dealing with so much all at once! I know sometimes we use expressions like “throw in the towel” out of frustration, but in case it’s more than that and you are having any suicidal thoughts, I want to share some resources with you.

      Sometimes local sources of support such as counselors or support groups can be very helpful. You can also visit https://findtreatment.samhsa.gov/ to find mental health services in your area. If you are interested in finding a support group, you can ask your doctor or call the Arthritis Foundation at 1-800-283-7800.

      If you ever get to a place where you seriously are contemplating suicide, there are resources available to help. The National Suicide Prevention Hotline is available 24 hours a day, 7 days a week at 1-800-273-8255. The organization also has a live chat option that you can access by visiting http://www.suicidepreventionlifeline.org/ Should you ever feel desperate, I urge you to use this resource.

      You are valuable and important, and you are contending with some very challenging circumstances. We all need assistance from time to time when those challenges feel too heavy. I certainly have had to call on mental health service support myself, and have found that talking to a compassionate person can be very helpful. Thank you for being in our online community, and for sharing what you’re going through. I do hope that your sons continue to be a comfort to you.

      Gentle hugs, Tamara (Site Moderator)

      Reply Created with Sketch. reply
  • By LManodori

    Hello,
    I’m new to both this site and RA. I have an unexplained Autoimmune disorder. It started on my Gi tract, moved to my thyroid and now my joints. I have been diagnosed with non-C reactive RA?? I literally woke up one morning with all over body joint pain. Both knees, hips, hands, wrists, elbows, shoulders and neck. I suffered a non-STEMI heart attack due to the autoimmune attack on my thyroid. It was after that that I developed the joint pain. Never had it before that. I am in constant pain, fatigued, and depressed. I am on prednisone, Methotrexate and Embrel shots. I can not work. Is this for real?? I cant live like this. It is going on a year and a half with a rollercoaster if trial of medications, severe side effects, change medications, feel better, feel worse, mostly feel worse, mostly feel exhausted and hopeless. Yeah…I know I sound Debbie downer but RA has ruined my life. Advise? Encouragement welcomed. Medication success stories needed.

    Lori Manodori

    Reply Created with Sketch. reply
    • By jeannettevance1

      Hi my name is Jeannette and I saw your post. How are you feeling now? I was just diagnosed with RA after 3 months of what I call excruciating pain. It came out of the blue. My legs hurt so bad it was like they were rags and someone was squeezing the water out of them. I had muscle pain, joint pain and bone pain. I’m a little better now. I’ve been taking prednisone for a month, but I’m already being weaned off it because I can’t sleep. I’m very afraid to go back to all that pain.

      Tell me how your doing and how your feeling now. I don’t think anyone can understand how bad it is unless you’ve gone through it yourself. I know how hard it is, believe me I was ready to end it all a couple times. I hope your feeling better now.

      If you feel like chatting I’m here,

      Jeannette

      Reply Created with Sketch. reply
    • By wannabe-healthy

      Jeanette, Hi, I’m Donna and wanted to say I’m not sure of how this forum works. You may have been responding to one of the other ladies, but I wanted to say I really need a friend who knows what it’s like. I’m sorry you had such a rough time with pain. I am guessing you haven’t had RA long. I can’t believe I’ve had it over 15 years (it took a while for my rheumy to decide if it was Lupus or RA. It has been one roller coaster ride, and I mean I have hit some terrible lows. The good thing is I always would get better, not healed, but better. The cycle begins after you are diagnosed and are put on medications that have side effects almost worse than the disease. I started out on Remicaid infusions and methotrexate injections. I was a teacher then and I stayed sick, Knowing it was hard to get a substitute, I would work anyway. I wrote another post about my job and how I had to leave it. I still miss it, and miss all the things I use to do. You are no longer the same person which adds to the confusion. Granted I am much older, so age brings all kinds of surprises, but I never dreamed I could go from healthy, happy, and functioning to what I am now. I believe I grieve for myself.
      You mentioned you didn’t want to experience that horrible pain again, and I certainly hope you never will. Are you already set up with a rheumatologist and is he/she going to get you on a biologic med? That’s so important, mainly because once the disease starts it can do plenty of damage quickly. Or, for some people it can. Everyone is so different. Some have a bad episode and go into remission and it is a long time before it bothers them again.
      As for me, I take it one day at a time. Today was not a good day, mainly because I’ve been dealing with a low grade fever and insomnia for a good while. My body is exhausted, but sleep is hard to come by. I’ve gone 3 night without any sleep and then collapse and sleep a full day. What bothers me is “not knowing”. That keeps me a bit on edge.
      Let me know about you and your situation. I’m hoping we can help each other along the way.
      Please take care and know you have friends who understand.
      May each day bring you more joy! Donna

      Reply Created with Sketch. reply
  • By wannabe-healthy

    I am also new to this forum. Years ago, I was on another, but there were some problems with a few members, so I’ve just now decided to join back up. Mainly because, like MrsDisappointment (may I call you MrsD?), I became so discouraged and depressed.I’ve been dealing with RA (and other illnesses) for 18 years and sometimes I really don’t know where to turn or what to do. My husband of 42 years is a great help, but it’s so hard to understand. Hopefully, I can get the understanding here, from people who know what it’s like. One thing I must say is, please never consider or even think about what it would be like to NOT be here. I will express to you, your family does not think of you as a burden, love isn’t like that. I believe everyone around us at some time has felt the frustration, but it’s because like us they don’t know what to do. There is no easy fix. But I keep telling myself I know it will eventually get better. I believe what bothers me so much is not just the pain, but what I used to be like and capable of doing. I used to run 4 miles a day, hike in the mountains. I’ve been fortunate enough to have experienced a lot, and now I sometimes don’t even feel like dressing, or even going out to eat. Knowing there is no way of knowing how I will feel from one day to the next, I’m unable to commit to anything. But, I just want to watch my grandchildren do as much as they can, to read, edit pictures, listen to my husband’s golfing adventures, just love life. I certainly sometimes lie in bed and cry, feel sorry for myself, wonder how I can take it. It’s the hardest thing i’ve ever done and there are no rewards for what we go through. Maybe we can start thinking of rewards for ourselves after a very bad week, or day. We HAVE to keep a thread of hope, no matter what. MrsD, I know that may not help, but just remember you are not alone.

    Reply Created with Sketch. reply
    • By Tamara Haag Moderator

      Hi Wanna Be, I just saw that you had a question that went unanswered for quite some time – I’m so sorry about that! Here is an article about my experience with the Vectra test as someone with seronegative RA: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/. For me, the Vectra test has been the only labwork with results that match how I feel. Rheumatologists typically don’t use it as a diagnostic measure but use it to assess disease activity. Thanks for reaching out with your question! All the best, Tamara (Site Moderator)

      Reply Created with Sketch. reply
  • By MrsDisappointment

    Thank you all so much for responding to my post. It helps to know I’m not alone, but I’m so sorry you’re all dealing with this terrible disease. I know someone asked about the VectraD test. My rheumatologist explained that it’s a blood test that measures your level of disease as well as predicts how much your disease will progress over the next 12 months. Anything over 40, i believe, is considered high disease activity. Mine was 59. I, like some of you, woke up one day in excruciating pain and that was my introduction to RA. My shoulder felt like someone had inflated my joint with boiling liquid and needles. I went to my ortho who said it was bursitis. Within a month, my other shoulder and both wrists had become affected. I was finally referred to a rheumatologist and the ready is history.

    Since my last post, I feel slightly less miserable lol. I’m still in pain every day but I’m hoping to get off the oral meds and start infusions soon.

    Thanks again for all your posts. I’m here if anyone wants to chat.

    Reply Created with Sketch. reply
    • By Tamara Haag Moderator

      Thanks so much for reaching out, Mrs. Disappointment! As you say, it often helps to know we’re not the only ones dealing with RA, since it can sometimes feel that way in our families/social circles/work places. I’m wish you didn’t have RA, but I’m glad you’re here, and hope you’ll continue reaching out any time you need an understanding ear or have helpful information to share such as you did about the Vectra test. Wishing you all the best, Tamara

      Reply Created with Sketch. reply